Advancing patient-led research and establishing a national IBD patient partner network in Canada: a call to action

As with many chronic illnesses, the experience of living with inflammatory bowel disease (IBD) varies greatly across genders, ages, races, and ethnicities.1 Patient partners, also known as “lived experience experts,” are therefore uniquely positioned to impact care and research, and are instrumental in informing research priorities, guiding knowledge translation and mobilization, and developing care strategies that are reflective of their lived experiences and the intersecting needs of their respective communities.2 Canada has among the highest incidence and prevalence of IBD in the world.1 However, despite the growing emphasis on patient engagement and patient-led research,3 patient partnerships remain notably underrepresented in the Canadian IBD research landscape.4 A recent scoping review revealed that, over the past 77 years, only 13 IBD-focused research studies in Canada actively involved patients as partners in the research process.4 This lack of patient engagement risks excluding valuable real-world insights, potentially exacerbating existing health disparities faced by traditionally underrepresented groups in healthcare.5 Historically, in IBD research, patient partners have often been involved in a consultative role, a pattern that aligns with our own experiences.4 Despite ongoing efforts to train and integrate patients as partners in research, this notable underutilization of patient engagement calls for immediate, focused action to address barriers to active patient involvement in Canada.4,6 Informed by our personal experiences as patient-researchers, this commentary aims to (1) advocate for the establishment of a national co-led IBD patient partner network (PPN) in Canada, and (2) outline the anticipated impact of this network in addressing the systemic barriers to patient engagement in the Canadian health research landscape. Our dual perspective as academics and individuals living with IBD (P.M., C.T., S.M.) profoundly shapes how we formulate research questions, interpret findings, and advocate for patient-led methodologies.7,8 Therefore, we recognize that patient engagement in research can be challenging for many reasons, including barriers to recruitment, time and resource constraints, and the added support needed to maintain meaningful and sustainable engagement. While these barriers may be multifaceted, the significant underutilization of patient engagement in the current IBD research landscape ultimately stems from the lack of dedicated infrastructure aimed at fostering meaningful collaboration between the patient and scientific community. Although several established PPNs exist in Canada, they are often limited in scope, restricted to specific organizations, communities, or provinces, lack a dedicated focus on IBD, or fail to adequately represent diverse patient groups and perspectives. To address this critical need, we advocate for the establishment of a national co-led IBD PPN in Canada. We envision this network as a centralized and dynamic platform, where lived experience experts partner with researchers, healthcare providers, and policy-makers nationwide to actively shape the future of IBD care and research. We will lead the establishment of the proposed IBD PPN through a multi-phase study called Co-Creating a National Network to Engage Communities in Transforming IBD Care and Research (CONNECT-IBD). The proposed PPN will address the following gaps: Patient engagement can be a complex process, especially for researchers with limited experience in this space. Similarly, patients are often unaware of opportunities to become patient partners, unsure of what this role entails, and/or unable to identify opportunities that align with their schedules and capacities for involvement. The lack of racial and ethnic diversity among patient partners involved in health research also poses great concern. Presently, the predominant demographic of patient partners in Canada consists of White, university-educated women of high socioeconomic status residing in urban areas.9 This lack of diversity in patient partnerships may limit the generalizability of findings in IBD research and weaken efforts to address health disparities faced by traditionally underrepresented populations. To address barriers to inclusive engagement, the PPN will leverage peer-to-peer recruitment and community outreach campaigns, acting in part as a patient partner registry for IBD patients, caregivers, and community members. As a centralized platform, the network will be able to facilitate a wide range of opportunities for patient partners to accommodate their expertise and preferred levels of engagement. The network will also strive to raise awareness of patient partners’ vital role in research by sharing success stories of their real-world impact, while addressing common misconceptions contributing to patients’ reluctance or hesitancy to participate. To enhance equity, diversity, and inclusion in patient partnerships, the network will collaborate with lived experience experts from underrepresented communities to: First, understand the specific barriers to engagement faced by minority groups (eg, cultural mistrust, language differences, etc.); and second, develop culturally sensitive and inclusive strategies to better facilitate their participation as partners in IBD research.5,10 In recent years, organizations such as the Canadian Institutes of Health Research have accelerated efforts, through their Strategy for Patient Oriented Research, to advance training for patient partners and researchers with varied levels of experience.6 However, there are no IBD-specific patient partner training programs that equip patients with a core understanding of the current IBD research landscape (eg, existing gaps, evidence, and priorities), potentially preventing them from engaging as fully informed partners in research. Empowering patients to engage in academic discourse through guided mentorship and experiential learning opportunities would be a transformative step towards a future where patients achieve true autonomy in shaping the research agenda as equal partners and leaders in the scientific community. By partnering with initiatives such as McMaster’s Family Engagement in Research Program, the PPN will aim to adapt validated training frameworks to develop an IBD-focused training curriculum.11 Patients will develop a further understanding of the current IBD research landscape, the fundamentals of research in practice, and their unique capacity to lead, design, and inform purpose-driven studies. We aim for the perspectives shared in this commentary to ignite meaningful dialogue and drive systemic change towards a more inclusive and equitable research landscape. Our vision is a future where patient engagement and patient-led research in IBD are not just encouraged, but prioritized and fully supported! Pranshu Maini (Conceptualization, Writing—original draft, Writing—review & editing, Project administration), Claudia Tersigni (Conceptualization, Writing—review & editing), Samantha Micsinszki (Conceptualization, Writing—review & editing), Kate Murray (Writing—review & editing), Brooke Allemang (Writing—review & editing), Karen Frost (Writing—review & editing), Eileen Crowley (Writing—review & editing). All authors read and approved the final manuscript. None declared. Conflict of interest disclosure forms (ICMJE) have been collected for all co-authors and can be accessed as supplementary material here.

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